*Friends, I am so excited for today's post. Today is the very first time I am sharing my space with a guest blogger. I first heard of Courtney's unique story a few months ago. Since then I have been so inspired by her life and the different ways she chooses to see beautiful. I know as you read her story below, you will too!
When my daughter was born, I thought they just needed to wipe her off.
At first glance, she seemed to be covered with a thick coating of white, causing confusion and panic with the medical staff, but it soon became clear that the towel the nurse was using to clean her wouldn’t alleviate anyone’s concerns.
Because the white covering was her skin.
Brenna was born nearly five years ago, joining her big brother Connor (who is now 7), in our family. She was taken soon after birth to the NICU of the nearby children’s hospital and diagnosed with a rare and life-threatening skin condition called Harlequin ichthyosis.
Because of her condition, Brenna’s skin basically doesn’t work very well – it doesn’t keep her hydrated, doesn’t keep germs out (so she can get infections very easily), and it doesn’t regulate her body temperature; she can’t sweat to cool herself off, so hot temperatures can be dangerous for her.
Brenna spent almost 6 weeks in the neonatal intensive care unit, where we experienced every emotion possible, including an anguished Christmas Day as she battled an aggressive blood infection that nearly took her life. In her four short years, Brenna has endured multiple hospitalizations, infections and surgeries.
Because Brenna’s body can’t form skin correctly, it tries to make up for that by over-producing skin, leaving her with skin that is dark red, dry and thick, and flaky. It looks very similar to a severe sunburn over her entire body, and she wears a thick lotion to combat the dryness.
We often hear the word “wrong” to describe our daughter. “What’s wrong with her skin?” or “What’s wrong with her face?”
So her skin appears different than most, and it doesn’t function like most. But wrong?
To be wrong is to be mistaken. And I don’t believe that mistakes happen with our awesome God.
What Brenna has taught us is that our differences are wonderfully diverse and help to give our lives distinct purpose, but we must always remember that our differences are not more important than our sameness, which is our shared humanity.
As we learn to appreciate and to celebrate our differences – our own and each other’s – it serves as a great reminder that the God who created each of us with unique purpose and talents also created us with a likeness in his image. Where society often mocks different, we have found God’s beautiful creation in our differences and are learning to glorify his awesomeness through our distinct personalities, gifts, abilities, shapes, sizes and colors.
Because Brenna has such a unique physical appearance, I know she will probably always receive reactions like staring and questions from other people who are uneducated about her condition, but it is my greatest hope that both Brenna and Connor will both have many opportunities to recognize their worth in Christ comes not from how they look but in who they are and how they love and serve others.
As a mother, I’ve come to realize that it’s a choice, every day, to celebrate the beautiful in this world. If we live our lives with resiliency and gratitude and purpose, then we can have the courage to tell our story of triumph, love, and true beauty as creations of God.
We are different, and we are the same – none of us perfect, but molded purposely by a perfect Creator. And there is nothing wrong about that.
Courtney Westlake is author of A Different Beautiful. She is married to Evan and mom to Connor and Brenna. After Brenna was born with a severe skin disorder, Courtney began chronicling family life and experiences raising a child with physical differences and special needs on her blog. Her writing has been published on sites such as the Upworthy, Good Housekeeping, Woman's Day and Yahoo Parenting. You can follow her on Facebook and Instagram.